The Final Entry

It was part of my father’s final wishes that I compose his last blog entry.

I am flattered that he thinks my writing is “eloquent” enough to bring closure to something that has come to mean so much to so many people…. but my dad is a tough act to follow!

First of all, since I have the forum to do so, I need to thank all the people (and there were hundreds – I am not exaggerating!) who took part in my father’s wake and funeral services. He used to worry that “no one would come”, and surely would have been blown away by the number of people who came to pay respects. I’m sure I am not just speaking for myself when I say that everyone was so loving and supporting, and the prayers were definitely felt, and brought us a great deal of comfort. All of my father’s final wishes were carried out: Sr. Sylvia (his angel) gave a beautiful prayer service at the wake, people made donations to St. Jude’s instead of sending flowers, my brother AJ stood to his right, Taryn sang beautifully at the funeral mass which was con-celebrated by Fr. Flanagan and Father Herb, my dad’s in-law’s did the readings, and people brought photos & other fun trinkets to bury my father with, along with one of Terry’s homemade blankets. Every detail was met, none to small. I think we did him proud.

My father truly left this world with no regrets. He said everything that needed to be said, and even left letters and gifts for the people who were closest to him. There is however one more thing I know he wanted to do, and it is my fault he didn’t get to do so….

He wanted to tell his blog readers (who have all come to mean so much to him) that he was going to become a grandfather this December.

When I found out I was pregnant, I could not wait to tell my dad. I knew he would be so excited. My husband and I really wanted to wait until the end of my first trimester to tell everyone, but made an exception for parents. Since I am due in December, we wrapped a framed picture of the ultrasound in Christmas paper, and gave it to him as an “early Christmas present”. Dad was ecstatic, and wanted to tell everyone right away. My husband and I understood, but really wanted to wait until the end of my first trimester to go public. I ended the first trimester the day after my father died.

I know he couldn’t wait to tell the world he was going to be a grandpa. He may not be here now to do that himself, and I am sorry for that, but to make up for it, I can share with you the video of when we told him. I don’t think he would mind.

http://www.youtube.com/watch?v=Z-gLAhM2JAk

There are so many qualities of my father that I hope our child inherits. I hope he or she is able learn from adversity, always advocate for themself, find humor in things that make other people cringe, and find it in their heart to help others – even when they are struggling. (I also hope our child shares my dad’s love for theater, passion for holiday decorating, and appreciation for diner food!)

Not only will my father live on in our child, but I hope he lives on through all of you. All he ever wanted was to attach some kind of meaning, or purpose, to his battle. If even one person has learned something from it, whether it be about a certain kind of chemo or just how to how to laugh when you feel like crying, I know that goal will obtained. Take what he has shown you, apply it to your life, make positive changes while you still can. But most importantly, stay strong and carry on.

With sincere thanks and love, Heather Wyman Boccassini 

CARRY ON

Jerry passed on June 2, 2011 at 11:40 a.m. The last two and half years have been a fight for my husband's life. We spent many hours talking about how it would be at that final moment. His biggest fear was that it would be painful. I promised him it would not. We spoke often of the afterlife and that moment when he would be taken from earth and transported to heaven...how it would be....who would come for him....would he be aware.....would he be afraid. We spent many hours speaking with clergy trying to put his mind at rest. He wondered if his Dad would be the one to come for him.....he prayed his Dad would be the one to come for him. I asked if at all possible, for him to give me a sign and let me know.

My husband's last minutes:

He spent his last days in a hospital bed in our den where family and friends spent countless hours visiting. The bed was alongside a picturesque sliding patio door that overlooked our beautiful patio and pool that Jerry took such pride and enjoyment in. His greatest joy was to see people joining in the pleasure of our backyard....our 'little piece of paradise'. As I sat by my husband's bedside and his breathing deepened, I asked him if he was in pain, he shook his head "no". He pointed in the direction of the patio door to the oxygen tank immediately in front to the bottom right of the glass pane. I attempted to give him oxygen but only to have him push it away. I became frustrated as he was trying to tell me something but I couldn't understand. He then grabbed my hand and gently and softly kissed it. I kissed his back. Within minutes he drew his last breath and left us.

As I sit here in his chair that has now replaced the hospital bed, I'm looking outside of that patio door and it's so clear to me now. I believe my husband kept his promise. The following was the 'sign' I asked for: I believe now he was pointing to the outside (not the oxygen) to tell me his Dad was waiting, surrounded by angels. I believe now he kissed my hand to say goodbye, it was time for him to go.

I believe my husband kept his promise and this was his way of telling me.... there was no pain, his Dad did come for him, and yes he was aware of it all, and no he was not afraid.

It is so comforting for me to know he went in peace, the way we prayed for and that he loved me enough to find a way to let me know.

I thank you all for your prayers, support and most of all the encouragement you gave to Jerry. Every e-mail, every comment, every card gave him the strength to go on.

I love you Jrrrrr and thank you so much for sharing your life with me....Trrrrr

Carry on............................

I'm Still Here

I'm still alive. Some days I feel like I'm going to die. Some days are worse, I feel like I want to die.

Everyone has been great.

While I can I want to thank everyne who has followed my blog, supported me and given me strength. You'll never know how much that helped me through this.

I made a lot of new friends. I cherish all of you and will remember you and your loved ones to God. I will tell your loved ones how much you love them and miss them. But they already know.

Carry on everyone, carry on.

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Day By Day

It seems that I get weaker each day that goes by. Slowly, but definitely weaker.

I've been getting a lot of visiters which is nice. This past week was highlighted by a visit from my nephew Matthew.

Carry on.

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This is How It Should Be

My EC comrades who have gone before me taught me many things about life and about handling this disease. They also taught me about dying.

Here are some brief accounts of their passings, taken from their wives’ blogs.

John Hawker:

Wednesday, June 9, 2010 7:14 AM, CDT

 Today at 3:55 am, our dear John...beloved son, husband, step-dad, brother, uncle, cousin, nephew, and friend...was released from his pain and passed into heaven.
Angels everywhere will turn their heads and watch the arrival of their new spirit, we know they have waited for him. They will feel our tears and know how much John is loved and how we all will miss him.

 Travis Poll:

Our prayers were answered and T passed peacefully today, the day before his 36th birthday, with me tucked in by him in the bed, my head on his shoulder and my hand holding his hand.

The following is from an email sent to me by Marilee Alvey. She gave me permission to share it.

Larry Alvey:

On July 27, my niece (more like a daughter to me) came over to see Larry. My daughter, Lindie, was there with me. Larry chose to go when the three of us were together. It was a brilliant decision. They've been like my angels, one on either side of me! Well, I went a few steps out to the deck to show my niece my deck. She'd never been over to our new place. That's when my daughter came out and said Larry's breathing was irregular. She was a bit distressed. I forgot that she'd never seen anyone die. All she knew is that breathing is good. Not breathing is bad. I went right in, took Larry's hand in mine and told him in a calm voice. "Larry, I'm right here. I told you I was going to put your hand in Jesus' hand, and that's exactly what I'm going to do." Our daughter held Larry's other hand. My niece stood patting his shoulder. He went. I put my hand on his heart and told him, "I'll be right here." His final flight was over. He passed over into the most beautiful place ever! Imagine his lungs breathing clear, clean, unpolluted celestial air for the first time. Imagine his feet and hands regaining their feeling! Imagine him running once again! No soreness. No fatigue! Now, Larry looks like he's about 20-30 years old! I believe he's flying!

I know that these friends are waiting for me along with Richard Martin and Travis Beus. I’m looking forward to meeting them.

We will carry on together.

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Hospice

I am under hospice care now. I’m not on my death bed yet but I do require more “comfort” care. And these people are absolutely great at making myself and Terry comfortable.
I think I still have some time left and the hospice people are helping to make it quality time. I can spend time with people who come to visit and enjoy life.

Perhaps I'll survive so long they throw me out of the program.

Carry on.

Be Prepared

I’m learning how to live with the bag. It’s inconvenient but in some respects it’s better than the Pleurx system. We’ll see how it goes.

My biggest problem now is that I have almost no energy at all. My blood pressure is very low all the time now even after hydration which I’ve had twice over the past week. I have nausea and pain off and on. I believe it’s all a sign of disease progression

I don’t think I’ll be writing much more about medical stuff unless something significant develops. At this point all the medical care is “comfort” care, palliative care. I will continue to blog as much as possible but it is likely to be focused on my thoughts and feelings as I get closer to the end. I tell you this because some people don’t like reading about that. So if you continue with me to the end ….. be prepared.

Speaking of being prepared …. I am. I’ve had two and one half years to prepare. One of my main concerns now is making sure that other people are prepared. That’s not easy.

I’ll begin this phase with the following story.

In September 2008 I was severely overweight. I battled the weight all my life, sometimes successfully, but always ending up where I started or worse. I’m sure I was very close to having a heart attack. God intervened. He said that the only way to get me to lose the weight was to have me get sick. He basically said that I could have almost three more years to make things right in my life. That’s certainly preferable to dying immediately from a heart attack. After learning of my diagnosis and prognosis I would have been very grateful to know I’d be able to live almost three more years. Of course three years doesn’t feel too good after two and a half years are gone but that was the deal.

I can honestly say that these last years have been among the best in my life. I am truly grateful. I plan to make my remaining days just as meaningful. I hope to see as many friend and family members as will see me.

I plan to carry on.

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A Bag of Junk

After getting the bag attached last Wednesday we had a minor problem develop by Friday. I noticed two chunks of tissue inside the bag. I wasn’t too concerned about that until the tissue lodged itself in the bag’s drainage plug and clogged it. The drainage plug is used to empty the bag as it fills up. It amazed me how this tissue could find it’s way through the tiny holes of the catheter, the narrow tubing and the entry valve into the bag but then get stuck in the drainage plug.

Anyway I could no longer empty the bag so I had to go back to the hospital. They gave me a new bag, a spare one and taught me how to flush the catheter. That was all very helpful but they should have done that from the start. The doctor looked at the tissue and said it was normal to get some. In fact he said it may be pieces of the tumor. So I asked him if we could increase the suction and try to suck all the tumors out.

Interestingly, during the first 48 hours I had the bag I was draining almost 4 liters of fluid per day. That’s an enormous amount. Since then it has decreased steadily to the point where now there has been none for more than 48 hours. Dr. Yablonsky, the interventional radiologist had said that sometimes, when the abdomen remains dry, the ascites may subside somewhat. I didn’t put too much faith in what he said because everything else I had heard or read, including from other doctors, indicated otherwise and gastroenterology was not his specialty. But maybe he was right.

Yesterday I had a routine appointment with Dr. George. I described some pains I was having and her suggestion was pain pills. Everything is palliative now. I declined. I’m not ready to knock myself out. It turns out I was dehydrated so she kept me there for hydration. That was an unexpected two and one half hour stay. I didn’t have my computer with me and my cell phone battery was all but dead so I settled in the chair for what I thought would be a boring afternoon. However Chris, a medical assistant, came over, sat down and spent a good hour chatting with me. We had never spoken to each other so much before. It turns out we have quite a bit in common. I really appreciated his time.

I had more energy after the hydration, but the pain continues. It worries me.

But for now I’ll carry on.

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Rough Days, Sunny Days

Monday I had the Pleurx catheter implanted. It was done by Dr. Yablonsky, an interventional radiologist. Everything went well including the fact that the conscious sedation kicked in at exactly the right time rendering me unconscious during the painful parts and waking up exactly when it was over. Terry and I left the hospital with me feeling quite well.

Later in the night the local anesthesia wore off and pain set in where they had made two incisions. It was bearable. By Tuesday afternoon the pain was worse but I’m accustomed to that kind of pain and knew it would pass within a few days. However a bigger was developing. Fluid was leaking from the incision where the catheter exited my abdomen. It wasn’t blood or puss or anything like that. It was the ascites fluid. The leaking got worse and worse until it was literally continuous, saturating dressing after dressing as well as my clothes. Obviously something was wrong. I called the hospital and they told me to come in Wednesday morning. It was a long night.

Wednesday AJ brought me to the hospital where we had a little fun with the woman at the registration desk. She had a little trouble with the fact that we both have the same name so she kept asking me my birth date. Dr. Yablonsky examined the incision and gave me the comforting news that he had never seen anything like this before. He brought me back into the procedure room where he looked and poked while watching on the x-ray screens. There was no anesthesia this time and he was poking and pushing pretty hard, trying to reposition the catheter and exit tubing. It hurt! He was not able to reach any definitive conclusion. He thought the problem might be that there was too much soft tissue around the tubing. I think “soft tissue” is the medical term for blubber.

Dr. Yablonsky decided to try abandoning the Pleurx method at least temporarily. He connected the tube to a bag in order to provide a continuous gravity drain. The idea is to not allow any accumulation of fluid in hopes that while dry, the “channel” that the exit tubing creates will heal and seal itself off. He told me if there was any more leakage everything would have to come out and I would be a Pleurx failure. If the leaking stops, we’ll wait at least two weeks for the channel to heal and then hope we can go back to the Pleurx. If at that point the leakage does return everything would come out. I think there’ also the possibility of continuing with the bag, an option I don’t like right now. He said we could also try implanting the catheter on the other side which to me seems questionable.

As of right now there has been no more leakage and the pain is going away. So far so good. But I hate the bag.

Then last night God sent us a consolation gift. Around midnight, Terry’s son Joe called from Arizona to give us the news of the birth of his and his wife Susan’s baby boy, Joseph Richard. What a pleasure it was to see Terry so joyous. Life goes on and new life joins in.

And one more thing ……………………

This is the tree Terry and I planted in the simmer of ‘08. This is the third spring bloom I’ve seen, at least two more than I expected. Warm weather is coming. So is the sun. I love the warm weather and the sun.

Carry on sunshine.

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Frustration

As I’ve said many times, patients have to be their own advocates or, if they are unable, someone they trust must do it for them. This applies not only to the actual medical care but also to such matters as insurance coverage. Here’s a case in point.

I have made the decision to have the catheter implanted so I can drain the fluid myself. For those who are interested it’s known as a Pleurx catheter. Pleurx is the brand name. After it is implanted each drainage requires the use of a Pleurx drainage kit consisting of a drainage bottle, 3 alcohol pads, a clamp, a cap for the valve, some gauze pads and a foam pad. A case of 10 of these kits costs about $750. You gotta love it. Based on my rate of fluid accumulation I would need about 8 of these per week costing $600 per week.

Before going ahead with the procedure I wanted to make sure my insurance would cover it. I looked into it several weeks ago by calling the insurance company and was told that it is covered but that pre-authorization is required. On Thursday the hospital called and wanted to schedule the procedure for tomorrow. I told the woman that was fine with me as long as she was able to obtain the pre-authorization. She felt she would have it by today so she scheduled it. Over the weekend I pulled out the insurance contract to satisfy myself that it would be covered and exactly what had to be done. My conclusion was that yes it would be covered and yes, pre-authorization is required. Throughout the day today I spoke to the hospital and the supply company and everyone was working on the basis that pre-authorization is required. Then, at about 4:30 in the afternoon the representative from the supply company called and said “Good news! No authorization is required”. I asked her what she was basing that on and she said she had just gotten off the phone with the insurance company. I told her that person was wrong, not what she wanted to hear because she was ready to put in an order. She argued that she spoke to the company herself and had a “reference number” for the call.

I have enough experience to know that the reference numbers only indicate that you spoke to them, it has nothing to do with their obligation to pay. I pointed that out to her and her reply was that conversation was all she had to go by. As politely as my waning patience would allow, I reminded her that was not all she had to go by. I told her that I had spoken to them twice, her own company spoke to them prior to this, and I myself reached the same conclusion after reading the policy. That’s 4 sources that said authorization is required, 1 that said it’s not. Do you think that 1 may be wrong? She agreed to call them again.

Shortly after that the hospital called, happy to have heard from the supply company that no authorization is required and ready to go tomorrow. Again very politely, I told her no, they needed to get this straightened out and rescheduled to procedure. Shortly after that the supply company called to say I was right, authorization is required and they would be faxing over the necessary paper work. Had I proceeded without it I would have been stuck paying for at least the first round of supplies. Dopes.

I should be having the procedure later this week. I decided to do it because although I seem to be able to have the fluid drained every eight days, the sixth and seventh days are very uncomfortable. So I’m useless three out of every eight days. I hope to be more comfortable more often when I can drain myself. It’s only palliative but that’s all I have now.

In general I’ve been feeling better since I’ve been off chemo for a while. I don’t like the fact that there’s nothing fighting the cancer now but it is what it is.

Carry on.

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For Patients

As an EC patient who used the internet extensively to learn as much as I could about my disease I wanted to make sure I passed on as much useful information to other patients as I can. There are a few things that come to mind now.

First of all, don't be discouraged by the results or side effects of initial chemo treatments. There are numerous ways to deal with the side effects. Talk to your doctor. S/he will probably have a remedy. If you don't get positive results from the first chemo regimen don't give up. There are others out there. Realistically, this disease usually cannot be beaten by chemo alone. Surgery is probably your best chance if you are in early stages. But chemo can buy you time. It can be precious time. And who knows, it may be enough time for science to find a cure.

The biggest disappointment to me was the Sir Spheres. I expected that treatment to put an end to the liver tumors. It did not. In fact I think it is the liver tumors will  ultimately kill me.

The biggest surprise to me has been the ascites. I've read a lot about this disease and about other patients and had never heard of this happening. It has been the most difficult symptom to deal with. Since I've had it I actually met another EC patient who suffers from it. He happens to live about two miles from me and goes to the same oncologist. But when I first started to be affected by it I didn't know anything about it. Unfortunately, the more I learn about it and the longer I have it the less I like it. It is usually a sign of disease progression. It usually never resolves. It is extremely uncomfortable. It sucks.

Fight as hard as you can and as long as you can while still maintaining a decent quality of life. We are blessed to be given the time and the inspiration to try to mend parts of our lives that need mending. But when the time comes it is because God wants you by His side. And there is no better calling.

Every patient is different. Your journey will be unlike all others. Wherever that journey takes you, whatever you encounter along the way........

Carry on.

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It's Official

Yesterday I saw Dr. George and told her my thoughts about stopping chemo. She was in complete agreement. When the Chemo Kaiser says no more chemo you know it’s time to stop. I had made up my mind last week but didn’t see her until this week.

I asked Dr. George how much time I could expect, a question she doesn’t like to answer. But I pressed her. She said that once people stop chemo it’s usually six to twelve months and right now my liver and kidneys are functioning adequately so that’s a reasonable expectation. That’s actually more time than I thought so it was encouraging. That much time may allow me to make a trip to Arizona and/or Florida. I plan to spend a day fishing with my brother. I haven’t gone fishing for a long time and to do it with him will be fantastic. And it was his idea! And we cannot overlook the fact that six months gives me another summer, my favorite time of year. Soaking in the sun is likely to buy me even more time. Most people don’t know it but I run on solar energy.

I go for paracentesis again tomorrow. Depending on how much fluid they get I’ll be making a decision about the implanted catheter.

Carry on.

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A New Phase, A Changed Life

Last Thursday I had blood drawn. On Friday I found out that my CEA count has shot up to over 700. The chemo is not working. Furthermore, my white blood count was way down and Dr. George said I would not be able to get it this week. So it seems clear. My body is not tolerating the chemo the way it’s supposed to be given and the way I’m getting it is not working. It’s time to stop chemo. It’s a tough decision but one that I knew was coming sooner or later. So now this battle will be fought by me, my body’s natural defenses, and God.

Today I went for paracentesis after eight days since the last one. They only got 7 liters out which is encouraging because last time it was 12 liters after eight days. That and the fact that I felt so much better afterwards really boosted my spirits.

I’m very close to getting the semi-permanent catheter implanted but I’ll probably wait another eight days and have paracentesis again. If the volume continues to decline I hope to avoid the implant.

I’m very happy to report that I was able to check off another item on my bucket list. There was an anonymous comment left on my last blog post that read in part “… I want you to know that you have changed my life. You have taught me to be more courageous, more grateful and more aware.” I don’t know about courageous but I have often said that this disease has made me more grateful, more aware of other people and more appreciative of things I never noticed before. If my blog has helped someone live their life with the appreciation I wish I had lived mine with then I have a accomplished something special. Some people have alluded to this in the past but anonymous is the first one to tell me I changed his/her life. So I’m checking it off the bucket list. Thank you anonymous.

Carry on.

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The Gifts Keep Coming

Last night Terry and I attended the engagement cocktail party for my son AJ and his fiancee Lindsey. It was a gift from God that I was able to attend. My ascites was at a very tolerable level and I had some strength. Had it been a week ago they would have had to roll me in. At the risk of being morbid, for me it was like the wedding. I don’t think I’ll be here next year when they get married.

At one point a song came through the music system that inspired me. Terry was involved in a conversation but I took her hand and said “come dance with me”. Mind you now this was not an event where people were dancing. And mind you Terry is much more inhibited than I and this is not something she would normally do. But she did. So in a little corner of the room, next to a speaker, we danced. And every man in the room was jealous. Can you guess what song it was?

The blessings keep coming.

Quickie

Yesterday I had the ascites fluid drained again after only eight days since the last one. For three or four days prior to that I felt miserable. They took out 12 liters. Twelve liters in eight days. It's coming back more frequently and in greater volume. I'm not sure what that means but I know it's not good. I'm looking deeper into the permanent catheter.

I scheduled an unplanned visit to Dr. George tomorrow. I want to have my blood drawn to check my CEA. If there's no progress I will stop chemo. If there is progress I may stop anyway. Quality of life is becoming more of an issue.

Carry on.

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It Should Be Me

Did you ever tell a loved one who was sick or injured that you wish you could take some of the pain, that you wish it was you instead of them? My mother has said that to me. And now she has actually done it. Last week the ulcer that led to the discovery of her lymphoma perforated. She was rushed into emergency surgery and they removed two thirds of he stomach. She is now in the midst of a difficult recovery. This is very similar to the surgery many people with esophageal cancer have to endure. I did not. It’s difficult to watch her suffer and I wish I could take some of her pain.

I had a paracentesis treatment on Monday and chemo on Tuesday. The fluid is back already and I’m very uncomfortable. But I’ll carry on.

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I'm A Reject

I was rejected for chemo treatment yesterday because despite three days of self injection with neupogen, my white blood count was too low. In fact it doesn’t get lower. It was zero. That makes me very susceptible to infection so please, not matter where you are, don’t sneeze or cough if you are facing New Jersey.

I’m disappointed because I really tried to get myself to the point where I could get normal treatment. But Dr. George explained that the cumulative effect of more than two years of chemo has compromised the ability of my bone marrow to produce the white cells. She was also hinting that I should be talking “things” over with Terry and think about taking a nice trip or otherwise enjoying life. It’s not a good sign when the Chemo Kaiser is leaning towards no more chemo.

My plan now is to inject myself over five days with neupogen and try again next week. I want to see if this chemo cocktail gets any good response. I also believe that God has guided me throughout this and the setback may just be His way of saying that less intensive treatment is the way to go now.

Carry On.

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Moving Along

Last week I had chemo treatment number 45, full doses of carboplatin and paclitaxel. Blood tests revealed that my CEA count has skyrocketed to 533.7 but I have been off chemo for a while. Hopefully the resumption will be effective and bring that back down. Interestingly, my liver function numbers have stabilized, in fact even improved slightly. I guess the chemo affects the liver function as do the tumors themselves.

It seems that this particular regimen is tough on me. It tends to result in three days of extreme fatigue, nausea and general discomfort. Just as it did when I first attempted it back in January, it made me feel like I was going to die and if I wasn’t, I wanted to. But thankfully that has passed.

Interestingly, I received a call from Dr. Rybalov, the gastroenterologist. He said he was speaking to Dr. Weiner, the nephrologist about me and they thought it would be a good idea if I started a combination of diuretics to try to alleviate some of the fluid build up. Dr. George already prescribed a diuretic so I’m having her get in touch with him to coordinate. What impressed me was the fact that two weeks after I saw him, Dr. Rybalov was still thinking about me. I’ve been lucky with doctors and in fact the whole health care system throughout this. And for the record, it has nothing to do with the recent national health care reforms other than the fact that I’m now paying more for the coverage.

Over the past two and one half weeks I’ve had the paracentesis twice. They removed 10 liters of fluid each time. I’m now getting albumin infusions with each procedure. Interestingly, the albumin looks like the fluid coming out. I think they may just be recycling the stuff back into me.

Over the last week I had to inject myself with neupogen so hopefully my blood counts will be good and I’ll be able to get the second round of chemo this week as scheduled. We’ll see. And we’ll carry on.

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The Results Are In

Well I’ve seen all the Doctors and all the test results are in. The best news is that Dr. Weiner, the nephrologist, determined that my kidneys are still functioning properly. He cautioned that they could start to fail at any time because they are under a lot of stress. But for now they’re good.

Dr. George advised me that the MUGA scan, for the heart, showed some improvement but my heart function is not back to the point it needs to be in order to resume the Herceptin. The danger is congestive heart failure. Keep this in mind.

Dr. Rybalov, the gastroenterologist, delivered some unexpected news although I think it may be very useful. I saw him primarily to determine whether or not I am a candidate for the semi-permanent catheter to drain the abdominal fluid myself. As you may recall from my last post, if the ascites is caused by portal hypertension the risk of infection is greater and they will not put in the catheter. According to Dr. Rybalov, the test results were “suggestive” of some portal hypertension. Portal hypertension is usually caused by alcohol consumption which cannot be the cause in my case. It can also be caused by none other than congestive heart failure. Hmmm. Here’s an example of how multiple doctors don’t always coordinate well. I don’t know how much Dr. George knows about portal hypertension and Dr. Rybalov had no way of knowing about the MUGA scan results. That’s why it’s important to stay informed and act as your own advocate. I told Dr. Rybalov about the MUGA results and he said the ascites was probably being caused by a combination of that and some liver disease. Interestingly, I pondered about the possibility of the ascites being caused by my heart back in my December 21st post. The bottom line is that Dr. Rybalov said he would approve the catheter if I wanted it for comfort. I don’t for now. Rather than take the risk I want to give my heart time to improve more and get some more chemo hoping to knock back the disease somewhat. If that alleviates the ascites I would be real comfortable.

Dr. George agreed that we can go full speed with the chemo now except for the Herceptin. That’s probably good for longer term heart well being. That’s what we’ll do next week.

One more thing. I’ve read a lot about how important it is to exercise as much as possible to help the immune system, the heart and general health. So I’ve been going to LA Fitness as much as I can. I have a pretty intense workout regimen which I recommend. I start with 20 minutes in the Jacuzzi followed by 10 to 15 minutes in the sauna. This routine is made even tougher by the fact that I don’t take a break in between. My fellow patients, push yourself to try this. It works for me.

Carry on.
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Double Update

Yesterday I, my brother and my sister saw my mother’s oncologist with her. She had the required tests and scans last week. The best news we could have hoped for was that they saw nothing they weren’t expecting and that treatment could be given as planned. That’s the news we got. So she is in a class for which CURE is the objective and statistically very achievable. Obviously we are very thankful. She will begin chemo next week.

As I said in my last post I learned a lot after seeing two specialists, a gastroenterologist and a kidney specialist. The gastroenterologist was suggested by Dr. George to determine whether or not I am a candidate for the semi-permanent catheter to allow me to remove the abdominal fluid myself. We don’t know the answer to that yet. There are basically two probable causes for the ascites. One is liver disease, the most likely cause in my case. The other possibility is a condition called portal hypertension which is usually found in people who drink. I never drank. If it is being caused by portal hypertension I would not be a candidate for the catheter for reasons I’ll explain later. To determine the cause, when I have the next paracentesis (draining) later this week a blood test will be done on the same day. The fluid removed will be sent out for testing and the protein level in it has to be compared with the protein level in the blood.

Assuming I am a candidate for the catheter, which is likely, I will have to make a decision as to whether or not I want it. As I’ve mentioned before there is a high risk of infection with paracentesis. The risk is even higher with the implanted catheter. The way the doctor explained it is that it is a foreign body in the abdomen. This foreign body has “communication” with the outside, constantly exposing it to germs if not handled properly. If it should become infected it is extremely painful, would likely require hospitalization, may have to be removed, and could be fatal. If the ascites is caused by portal hypertension the risk of infection is greater which is why that don’t use them for those patients. I would also have to consider the restrictions the implant would impose. I would no longer be able to mountain climb, sky dive or bungee jump.

This doctor gave me the prescription for the next paracentesis but also ordered that albumin be injected as the fluid is removed. The albumin should help to counteract the negative effects draining has on the kidney and my blood pressure. He was so helpful I figured I’d take a shot and ask him if he had a cure for me. He didn’t.

From his office I went to see the kidney specialist. He was very informative, most notably in explaining why I have so little urine. Because my fluid is escaping into the abdomen, it is not flowing through the blood stream to the kidneys. The kidneys, since they are not getting fluid, are tricked into think that I am dehydrating. They shut down urine production to conserve fluid. This forces more fluid into the abdomen. This is a self perpetuating condition which they can do nothing about. The longer it continues the more likely it is that the kidneys will shut down completely, That will be the end. By the way, dialysis has not been successful in this situation. The only hope of breaking this cycle is to treat the underlying cause of the ascites. Hence my quest to get more meaningful chemo and at least stabilize the liver tumors.

This doctor ordered another blood test, urinalysis and a kidney ultrasound to rule out any other cause and to assess the present condition of my kidneys. All of these tests have now been done and I’ll see him again next week hoping to get the go ahead for more chemo. He also agreed with the gastroenteritis’s use of albumin.

Today, weather permitting, I’ll have the MUGA scan to see if my heart is ready for more Herceptin.

So the plan is progressing; get every part of me ready for battle and then head for the front line.

Carry on.
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Thank You Althea

I saw two specialists Wednesday but don’t feel like writing about medical things right now. Suffice it to say they both want me to have some tests done and neither one has a cure for me. I did learn a lot and will write about it soon.

I do want to correct two wrong impressions I seem to have left with my last post. First of all I have nothing against hospice. I think they are a great organization with even greater people involved. I plan to use them, just not yet. It seems the trend these days is to get hospice involved earlier than what used to be so they can get familiar with the patient, family and circumstances. People used to wait until they were on their death bed. I will wait until I am at least close to my death bed and I’m happy to report that I’m not close yet. Fortunately I’ve been feeling good. I even got out and cleaned all the snow off the driveway, sidewalks and cars yesterday. Then I went out to lunch with AJ and his fiance.

The other wrong impression I gave some people was that I was now seeking a natural cure. I am not. My intent is to get my body strong, mostly on it’s own but utilizing any medical intervention needed to get it there. I will have tests done to make sure it’s ready. Then, hopefully, I will mount another full scale chemo attack.

Now I’d like to share something I received last week. My good friend Linda works with a lady named Althea. Linda shared my blog with Althea and Althea wrote a poem which Linda forwarded to me. I hope it doesn’t seem like I’m tooting my own horn. It just made me feel good.

A BEACON OF LIGHT

Dedication to

Jerry Wyman

For the past 28 months, you've shared the struggles you face

Ups and downs, highs and lows, have dominated your race

Amazing how your sense of humor, is well and so alive

The laughter you give helps us to bear, the tears here in our eyes

You mentioned how you wonder, why God has prolonged your life

It is because he has ordained you, as a beacon of light

For you to be able to encourage another, while you are going through

Is evidence you are an angel, and God is using you

For it is said that God knows, how much we can bear

He uses the strong to help the weak, realize hope is there

Our prayer for you Jerry Wyman, is that you will receive

All the strength you’ve given out, for others relief

May God grant you and your mom, sweet serenity

As the two of you press toward victory, through your journey

By: Althea Price-Drayton

http://www.expressionswehave.com/

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Plan Implemented

Yesterday I saw Dr. George. My blood was drawn and I was given the go ahead for chemo. But I told her of my inclination to take some time off from chemo and my reasoning. She suggested I contact hospice. Well, that was not her immediate response but the topic did come up. I’m opting out of that for now too.

Dr. George was actually very supportive of my idea. I gave her every opportunity to talk me back into chemo but even the Chemo Kaiser doesn’t have enough faith in this regimen to insist on it. She even raised another argument in favor of taking time off; the risk/reward consideration. There’s the risk of doing damage to the kidneys or further compromising my immune system with little expectation of reward.

Dr. George has helped me implement my plan with gusto. Tomorrow I will see a kidney specialist to assess the current condition of my kidneys. Hopefully we’ll find out they can tolerate some more abuse. I’ll also see a gastroenterologist to get advise about the ascites. We will consider a semi-permanent catheter so I can drain the fluid out myself on a daily basis. Some people have suggested this to me previously but I’ve resisted because I’m afraid it will be restrictive. I probably don’t have a choice now. I still have to schedule the MUGA test to see if my heart can take more Herceptin.

So my hope is to prepare my body for a full attack on the disease in a few weeks. If things don’t work out, by that time I may be ready to talk to hospice.

Carry on.

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A Tough Decision

I have a close friend who is a doctor. He doesn’t practice conventional medicine, rather alternative approaches such as nutritional changes, vitamin supplements and lifestyle changes. Since I began my ordeal he has recommended that I not take chemo because even the doctors who favored chemo admitted it was not a cure. He told me the chemo agents are toxic. They will eventually destroy my body by knocking out my natural immune system, eating away at muscle mass and destroying my kidneys. I did not take his advise, opting instead for conventional treatment. I think I made the right choice.

But at this point in the journey it may be time for an adjustment. So tomorrow I will talk to Dr. George about suspending chemo for a while. Here’s my thought process causing me to lean in this direction.

I’ve been experiencing something I haven’t mentioned before that is related to the ascites. I rarely urinate anymore, usually twice a day and only a trickle each time. It seems that virtually all my bodily fluid is accumulating in my abdomen. It is not passing through my system. This means that my kidneys are not being flushed out. Since I started chemo it has always been stressed that it is important to hydrate so the kidneys can be flushed. I suspect that because my system is not being flushed the chemo is staying in my body longer than intended. This may explain why my bone marrow has been having trouble regenerating white blood cells quickly enough.

I have no reason to think my kidneys are damaged at this point. But if I continue to put chemo in them without flushing them out they certainly will become damaged. I would then die of kidney failure.

I have very little muscle mass remaining. I have a great big belly from the fluid, yet the skin on my upper arms hangs and dangles like a ninety year old man. I am very weak in my arms and legs.

I am having fewer and fewer days when I feel relatively well. Aches, pains, fatigue and general discomfort are the norm. This may be from disease progression which argues for taking more chemo. It may be from the ascites which would mean it won’t stop unless the ascites stops. But it may also be from the accumulating effects of chemo.

For the sake of argument let’s assume that going ahead with this chemo regimen is the correct thing to do. The problem with that is so far it’s been impossible. The regimen calls for three weeks on treatment then one week off. I had one week on and then was unable to get treatment for the next two weeks because of the low white blood cell count. Dr. George wanted me to also have Herceptin but cannot give it to me now because of the damage it has done to my heart. The damage is reversible and I’m supposed to have another MUGA test in the beginning of February but for now, no Herceptin.

The point is it seems that at this point in time I’m only able to mount a half-assed assault on the disease.

Depending on what Dr. George has to say, my hope is to take several more weeks off from chemo. During that time I want to rebuild my strength. I’ll have the MUGA test and hopefully be able to resume the Herceptin. My kidneys will get a break. If I’m really lucky maybe it will turn out that the chemo has been causing the ascites and I’ll get some relief from that. Then I’ll go back on the chemo at full strength and hope to get a response from it.

I don’t know if this is the right thing to do. I’m nervous about it. But it may just be that it doesn’t matter what I do now. The point I’m at now was never unexpected.

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Today

Through the grace of God I was able to have the paracentesis today. They took 8 ½ liters of fluid out of my abdomen. It’s amazing to me that there could be so much in there. For those who are metrically challenged that’s more than 4 large soda bottles. It’s about 2 ¼ gallons sloshing around in my belly putting pressure on my organs, my diaphragm and the blood vessels that supply my legs.

It’s hard to describe the relief this procedure provides. It’s temporary and does nothing for the long term battle except to give me strength to fight on.

I think this is an appropriate time to share the following. I’ve seen it several times. It was recently sent to me by Marny whose husband died of esophageal cancer quite some time ago. She still contributes to a list serve I subscribe to and has inspired me many times.


DAILY SURVIVAL KIT FOR SERIOUS ILLNESS
by Thomas L. McDermitt

1. Today I am going to try to live through this day only, and not dwell on or attempt to solve all my problems at once; just focus on the piece that is today. I can do something for several hours that would be difficult to even think about continuing for several months.

2. Just for today, I am willing to accept the possibility that there is a purpose to this suffering; that it can be a source of meaning and growth for myself and others, though I may not always recognize the ways. And it seems possible that this suffering will not be in vain, because of what may be some kind of existence beyond.

3. Just for today, let me remind myself that I am basically a worthwhile person, worth loving, despite my faults and limits. I deserve the efforts of others to help me through my illness.

4. Just for today, I want to be aware that it is all right to want too much from others at times. Illness brings out and intensifies the small child in all of us. And if I feel hurt when those who care for me cannot be there, it may help to remember that they have needs, frailties, and limitations of their own. A lack of response does not mean that they are personally rejecting me.

5. Today I may feel the need to complain a great deal; I may have little tolerance; I may cry; I may scream. That does not mean that I am less courageous or strong. All are ways of expressing anger over this mess, of rightly mourning my losses. Endurance itself is courage.

6. It is my life at stake now. So maybe today I can allow myself to be a little less concerned about the reactions or impressions of others. Maybe I can allow myself to feel a little less guilty or bad about what I did not accomplish or give. Perhaps today I can be a little more gentle toward myself.

7. Surviving this is all so difficult. At times it seems impossible - that I have had enough. Down the line I will know if and when I have had enough, when I cannot push the limits any further. I will have the right to choose to stop, without feeling that I am "giving up." But today I think I can deal with this illness. Sorrow runs very deep, but I think I can rise again.

8. Just for today, maybe I can give healing "the benefit of the doubt." The drugs are powerful; the natural healing capacity of my body is powerful. And who knows, perhaps there is healing power in my will to struggle, and in the collective love and will of others.

9. Just for today, perhaps I can take heart that we are all connected. And I may still have some things left to contribute to the family of man; some light to add to the light. Even now my endurance (however imperfect) is a gift, an inspiration for others in their struggles.

10. It seems reasonable that there is a season for everything, and a time for every purpose. Pain, weakness, and exhaustion may distort my senses and spirit. Today, however, I can at least find some hope in nature's way, if not in some master plan. The chances are fairly good, and it seems worthwhile to hope, that I will have some cycle of wellness yet.

Copyright © 1989 Thomas L. McDermittCarry on.

Carry on.

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Losing Control

Throughout this battle I’ve tried to find out what has to be done, lined things up to get it done and then move on to the next challenge. I’ve listened to all the professionals but have taken the approach of trying to make decisions for myself and to stay on top of things. That’s becoming increasingly more difficult to do. Yesterday I went for the chemo treatment that was delayed a week because of a low white blood cell count. Also, I’m already at the point where I need another paracentesis treatment to remove fluid so I was going to discuss timing with Dr. George, hoping to delay it a little but having things set up and ready to go. My plan didn’t work out. My white blood cell count is even lower than it was last week. Dr. George explained that the longer one is on chemo the more difficult it is for the bone marrow to produce the cells. Another one of the cumulative effects. So no chemo. And no paracentesis which carries a high risk of infection under normal circumstances. The plan now is for me to again give myself daily injections of neupogen to boost the white count. We scheduled the paracentesis for Thursday. I’ll go to Dr. George first to test the blood and if it’s ok I’ll go right o the hospital. But I don’t think that’s enough time to get the blood count up. Chemo is now scheduled for next Monday. It bothers me that my body is not letting me do the things that I know need to be done. I’ll suffer through the delay in the paracentesis but another delay in chemo is not good. Without it I have no chance. Can anybody read that writing on the wall? ----------------------------------------------

Good News

My mother's lymphoma has a very high cure rate. Barring anything unexpected from some scans she will have done next week her prognosis is excellent. She will have to undergo chemo and radiation which I hate to see her have to go through. But it seems that if you have to have cancer, this is one of the ones you would want. It'll be a battle, but a winnable one. And I'll battle it with her, hopefully to the end. Speaking of hope I have one that may be unrealistic. My son AJ is now engaged to his longtime girlfriend Lindsey. They both seem very happy. My hope is to make it to their wedding.... in July 2012. Let's go for it! Carry on. ----------------------------

Maybe This Is Why

I have often pondered why God has given me as much time as He has. I couldn't come up with an answer and eventually concluded that He is just blessing me with the abundance of gifts I have been given over the past 28 months. But I may have an answer now. Yesterday my mother was diagnosed with lymphoma. It may be that my remaining purpose is to help her fight her battle. On Friday she has an appointment with an oncologist. I will go with her and continue with her as long as I can. This Spring's marigold planting will be especially sweet. We'll carry on together. -------------------------------

None of the Above????

Today Terry went with me to see Dr. George. We were going to have the discussion about whether it made sense to continue chemo or stop it to go for better quality of life remaining. I began that talk but Dr. George quickly put an end to it. She told us that she could not give me chemo today as scheduled because last week's treatment had knocked my white blood count down too low. The low count was also the likely reason for my feeling so badly the last few days. That came as good news to me. I'd rather it be that than the things I was considering. And I have been feeling better today. Thank you for all your concern and prayers. Now if I may ask, please pray for Robbie LaSalle who had the surgery a short time ago and has been having a very difficult recovery. And they just found new tumors in his liver. So the plan now is to skip chemo this week and go onto a two week cycle instead of the planned three weeks on one week off. We're back into that balancing act ... treatment vs. side effects and weighing that against the benefits. And we're hoping. And we're carrying on. ------------------------------------------

Short and Sweet (Well Not Really Sweet)

I was trying to go three weeks before having another paracentesis treatment but didn't make it. On Thursday night I suffered and thankfully Dr. George's office was able to get me set up for it on Friday. Terry had to shovel us out of the snow which made me feel real bad. But we got to the hospital and had it done. They took out 6 liters, the maximum that Dr. George prescribed. But after 6 liters the flow was still strong and the radiologist said there was a lot more. When I woke up Saturday morning it felt as if I didn't even have it done. I could tell there was more fluid. I have been feeling extremely fatigued and lacking of any meaningful energy. I'm having unusual pains. I sleep 12 to 13 hours a day. Tomorrow I will talk to Dr. George to try to determine if I'm feeling this way because of the chemo, the disease or the ascites. Then I'll decide what to do next. Carry On.

Hanging On By A String

Over the last few days I got PET scan results and blood test results. None of it is good. The scan showed the tumor in my liver has gotten larger and there are several new ones. The same is true for my lungs. The blood test showed my CEA count increasing again. It’s now at 289.5. None of this was unexpected. We knew the recent chemo regimen wasn’t working. Dr. George, who up to this point has never said anything negative, was as negative as I think she’s capable of. She said there will be a point when I have to decide if there is any point to enduring more chemo and if it makes more sense to switch to “comfort care”. I think I know her well enough to know she’s telling me that point is rapidly approaching. She also said frankly “I’m out of options”. Not me! I wrote earlier that I was going to talk to Dr. George about some regimens I had read about which I did last week. Between that conversation and this week’s she agreed to try carboplatin and paclitaxel. I think at this point she would agree to anything I wanted because she’s got nothing better. I’d ask for rum and coke but I don’t drink, so maybe I’ll ask for liquefied cake and ice cream. I only got the paclitaxel on Monday. There was concern about my kidney function so Dr. George wanted to see the blood test results before giving me the carboplatin. Today the results showed the kidney was OK so I got the carbo. Monday I’ll get a second round of each at the same time. Although I’ve never had these exact two chemo agents before I have had their cousins so there’s probably not too much hope. But it’s worth a try to buy some more time. I also have another regimen lined up if this doesn’t work. My only hope now is for one of these regimens to kick in and knock these tumors down for a while. I’m hanging on by a string now. The fluid is back in my abdomen. Judging by the size of my belly there’s more than ever but it is not yet uncomfortable enough for me to go for the paracentesis. Carry on. ---------------------------------------------